Today will mark 10 weeks we have been at All Children’s Hospital. 10 weeks. I can hardly believe it has been that long.
One of the many things I have learned in these past ten weeks is how very vulnerable my walk with Christ is. I have been attacked many times by satan tempting me to abandon my faith that the Lord will do what He says He will do. I have cried more than any mother should cry. I have been numb, angry, depressed, heartbroken…wash rinse repeat.
Yet the one thing I have never felt is abandoned. I have always known, even in the darkest moments of the past 10 weeks that my God has not abandoned me or my daughter. I have never lost that nagging hope in the back of my heart that says “Be still and know that I am God. Watch what I am about to do.”
That has never left me.
Emma’s EEG yesterday showed no breakthrough seizures. She is down in MRI while I pack up her room. We are going to Tampa General for inpatient rehab if all goes well with her MRI this afternoon.
Honestly, as odd as it sounds, I am going to miss being here a little. This has become our second home, and it will be sad to leave (and a little frightening). But on the other hand it will be great to go to the next phase of this journey. It will be a lot of hard work for her, but it will be such a joyous moment to see her be able to do things that she is not able to do just yet.
She is like a baby, and will have to relearn how to do the smallest things. The last week that she was in school they did a developmental test to see at what age she was developmentally. My dad went and picked it up yesterday for the therapist at Tampa General Rehab. Honestly, I can’t bring myself to open it. I can’t bear to see where she was then compared to now, it is just too hard at this moment.
This is all just too hard.
But then those words keep me sane..
“Watch what I am about to do.”
I am watching Lord, show me.
Amen. May He increase and multiply and do amazing things — you reflect Him well, Heather. Praying for your girl.
I am waiting and watching with you Heather. Remembering you all in my prayers. Baby steps for Emma right now as she continues to recover. I know He has wonderful things in store for you ahead. Asking Him to lift your burden Heather.
Love and Hugs, Laurie
Our God is not a God of odds. He is a God of healing, restoring, “watch what I can do moments”. Hugs to you and many prayers being lifted.
God is so awesome! We’re watching right along with you. {{hugs}}
I am so happy to hear this news about Emma! God is faithful and will always be there for you.
I am glad Emma is progressing.
As hard as it is to look at the test from the day before, having that is a blessing from God. Many times, the doctors have told me they wished they had something like that for my daughter. All we have documented is after. For the before, there is only what I say she was like to go on. That test is a gift from God.
We will be watching with you, Heather, awaiting the wondrous things the Father will do in all of your lives. May you be blessed.
We plan to be driving through Tampa this week-next, and will be remembering you all and saying a special prayer.
Shalom upon your household~
I read a prayer today from 1 Chron 20: 13-17 when Jehoshaphat went to the Lord concering the enemy coming upon him & his people in battle. I believe we can put our own problem in place of his and pray this prayer. The best part is God’s reply!
” For I have no might to stand against this great ( Emma’s health issues) that is coming against me. I do not know what to do, but my eyes are upon you.”
And the Lord said: “Do not be afraid or dismayed at this great (illness), for the battle is not yours, but Gods! You shall not need to fight in this battle: TAKE YOUR POSITION, STAND STILL, and SEE the deliverance of the Lord who is with you. Fear not nor be dismayed.”
And then the people SANG PRAISES to God………
Praise the Lord today & thank Him that He is fighting this battle for you
Praying today is a great day. That you all will find favor at the new facility. That these people will be healing angels to Emma. That there will be compassion at every turn for you and Mark. That this will be the shortest of stays. That your baby will be home in her own bed soon. Amen.
It will take our breath away to see the beauty that He’s made!!
We’re watching with you, girl. And we’ve got your back (not nearly as well as the Lord has it, but we’re here just the same)
I don’t know you from Adam (okay, maybe from Adam, but not Eve). We’ve never met, but I feel a sweet connection. Same love of God. Same determination to believe in the middle of lifes storms (or, in your case, hurricanes). Same mama bear protection of your babe. Same joy in the tender mercies God gives us. It fills my soul with joy to know you through your blog and I know He is continually aware of your every worry.
Thanks for taking me along on your very personal journey. It’s a blessing.
Sending you thoughts and prayers of joy and strength today. xx
What a praise 10 weeks later to celebrate how far God has brought Emma. What a praise to know that so many doctors, nurses and other medical staff have been able to see the faith of precious Emma’s parents hold them steadfast in the midst of a storm. What a praise to see the growth of your faith, but also the growth of the faith of so many who have been praying for Emma & your family (many with out even knowing any of you or you them).
I just can’t wait to see what else God has planned to use this sweet girl to show Himself to so many! <3
You encourage my heart sweet girl. Praying He will do something miraculous!
I love you dearly, and share in your feelings- from awful beyond belief to joy at the little things. I am still struggling with God right now, to be honest. Really struggling.
There were hard, hard words spoken to me two weeks ago at the beginning of PT- “You will be like a child, learning to walk again.” I am 45, not a child. But, after trying both in water and on lad to walk again, I realized just how much my lower body has deteriorated in 6 months
So, like a child I become.
I hope beyond hope she continues to progress and become the Emma Grace you desire in your heart of heart for her to become,
I will be praying to the end.
Hugs to all of you.
Praying for you…when you can’t…
Lifting your arms…when you’re too tired…
He will not leave you or forsake you. Believing with you.
Sending love and prayer,
XO*Tricia
She is so beautiful…thanks for sharing your precious Emma. Rejoicing with the amazing progress and praying for more and more!! Lifting up your sweetie and all your hearts continually!! Trust in the Lord with all your heart…HE WILL MAKE YOUR PATH STRAIGHT. Prov. 3:5-6
I found your blog while doing research on Mitochondrial Myopathy. I have a clinical diagnosis but am waiting on a muscle biopsy to confirm. I am 30 years old and have gotten progressively worse over the last year. I cried while reading your posts and rejoice at your strong faith. Do not let Satan get to you. God surrounds us on all sides and nothing can get to us that did not go through Him first! Thank you for sharing your faith and your struggles. I know God will use you and Emma for His glory and to bring awareness to this terrible condition. Psalms 121:1-2
Trust in the Lord always…..He already sees the end result and it will be fantastic!!! Praying…
Hi Heather,
I read about you in the encourage blog, and I entered your blog to read your most recent post. You have given me hope. God is an amazing Father, and through our toughest moments he always reasures us that he is in control. All we have to do is trust in HIM. My daughter was diagnosed with scoliosis. At the present time the doctors want to do surgery to prevent the condition to get any worse. I am scared. Reading your story has given me hope. Will be following your blog and praying for you and your daughter.
I just found your blog and wanted to tell you thank you and good luck.
Do not doubt in the darkness that which you know to be true in the light. I have to constantly remind myself of this. Youa re in our prayers!
Just checking in to let you know I am still watching with you. I am praying no news here is good news and that sweet Emma continues to recover and heal. Praying your family through the darkness of this cloud that is hiding the light that is ready to shine again.
Love and Hugs, Laurie
how can we stand without parents
I’ve been reading your blog for a couple months now, but I’ve never commented. Today I just wanted to say that your family is in my prayers. Praying for health and healing and that He will keep you strong through this hard time.
Praying things are going well.
It has been a while since I checked in and I am glad I did!
Your strength is amazing and such a beautiful testimony of your faith!
God IS Good and He will bring you through. Just like I tell my kids and the kids I teach on Sundays, when we get to Heaven and look at our lives and how they intermingle with EVERYTHING ELSE and EVERYONE ELSE, we will see WHY these things happen….it will all fit like a beautiful puzzle!
My prayers are with you and your family!
Hope you’ll post soon. Is everything okay? Praying.